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Pelizaeus–Merzbacher-like disease
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Rheumatology consultant with specialist interest in Lupus
Hello, is anyone in the Humberside/ Lincolnshire area under a n NHS Rheumatologist that has a special interest in SLE. ( Lupus) I have moved house and need to find a new rheumatologist. Many thanks
Hello, is anyone in the Humberside/ Lincolnshire area under a n NHS Rheumatologist that has a special interest in SLE. ( Lupus) I have moved house and need to find a new rheumatologist. Many thanks
Jenfy34
in
LUPUS UK
6 months ago
prostate metastasis
hello - please excuse me if I don’t use correct medical terms - I’m learning! My husband was diagnosed almost a year ago with stage 4 (via prostate biopsy) prostate cancer that had metastasized….. multiple bone areas affected per his 2 Nuclear Bone Scans, Cat Scans etc - his PSA was off the rails = 1343
hello - please excuse me if I don’t use correct medical terms - I’m learning! My husband was diagnosed almost a year ago with stage 4 (via prostate biopsy) prostate cancer that had metastasized….. multiple bone areas affected per his 2 Nuclear Bone Scans, Cat Scans etc - his PSA was off the rails = 1343
Myshadowgirl1
in
Advanced Prostate Cancer
8 months ago
IBS and Coeliac
I have managed my Coeliac disease since 2009 but last year had a colonoscopy which confirmed my new symptoms were IBS D!! I struggle to know what to eat and feel my quality of life has taken a dive. I have never been someone who gets down but this is seriously effecting my mental health. Two weeks ago
I have managed my Coeliac disease since 2009 but last year had a colonoscopy which confirmed my new symptoms were IBS D!! I struggle to know what to eat and feel my quality of life has taken a dive. I have never been someone who gets down but this is seriously effecting my mental health. Two weeks ago
Mollydav
in
IBS Network
6 months ago
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Heart rate monitor results - another update
We had our second private consultation today for mum. Mum had the Zio XT monitor for a week. She has permanent AF and HF and the past couple of months have been so difficult as mum hasn’t felt good pretty much every day. The consultant said mum’s average heart rate is around 80 bpm, but the monitor
We had our second private consultation today for mum. Mum had the Zio XT monitor for a week. She has permanent AF and HF and the past couple of months have been so difficult as mum hasn’t felt good pretty much every day. The consultant said mum’s average heart rate is around 80 bpm, but the monitor
Nickybhf
in
AF Association
5 months ago
Advice
Just started chemo again mastactiic high grade serious carcidoma on ovarian mass after 18m break recurrence had letter saying it spread I have chronic kidney disease ca123 195 right enlarged mass on ovary may have to have spleen removed not good read I am trying to decide as the letter says chemo
Just started chemo again mastactiic high grade serious carcidoma on ovarian mass after 18m break recurrence had letter saying it spread I have chronic kidney disease ca123 195 right enlarged mass on ovary may have to have spleen removed not good read I am trying to decide as the letter says chemo
PaumicB123
in
My Ovacome
8 months ago
Most effective ablation method?
I am scheduled to have open heart surgery (OHS) to replace my aortic valve and while my chest is open the surgeon said they believe it would be a good time to perform a Maze ablation for my persistent afib. FYI: I was diagnosed with afib and tach back in 2008 - both were controlled well with flecainide
I am scheduled to have open heart surgery (OHS) to replace my aortic valve and while my chest is open the surgeon said they believe it would be a good time to perform a Maze ablation for my persistent afib. FYI: I was diagnosed with afib and tach back in 2008 - both were controlled well with flecainide
Jafib
in
Atrial Fibrillation Support
10 days ago
Donepezil as an aid for PSP
Hi all you good people, A couple of weeks ago a fellow traveller here wrote about her husband with PSP that as his cognition and swallowing declined, his Doctor prescribed Donepezil. Originally, he was on 10 mg of Donepezil which improved his swallowing, alertness and cognition. Two years later when
Hi all you good people, A couple of weeks ago a fellow traveller here wrote about her husband with PSP that as his cognition and swallowing declined, his Doctor prescribed Donepezil. Originally, he was on 10 mg of Donepezil which improved his swallowing, alertness and cognition. Two years later when
Richard33
in
PSP Association
8 months ago
B6 - advice
I’m confused about B6. is the advice with Co-Careldopa not to take, at all. Or to take after Co-Careldopa has been absorbed. my recent blood tests showed me deficient in B6. thanks
I’m confused about B6. is the advice with Co-Careldopa not to take, at all. Or to take after Co-Careldopa has been absorbed. my recent blood tests showed me deficient in B6. thanks
Nb11
in
Cure Parkinson's
8 months ago
Adrenal cortisol expertise needed
Hi! I was diagnosed with adrenal fatigue / low cortisol 10-plus years ago and take 10 mg of hydrocortisone (tablet) in the morning and at noon. I just received results of diurnal saliva cortisol test and am surprised/confused at the results. Does this group help with adrenal issues, or is there a different
Hi! I was diagnosed with adrenal fatigue / low cortisol 10-plus years ago and take 10 mg of hydrocortisone (tablet) in the morning and at noon. I just received results of diurnal saliva cortisol test and am surprised/confused at the results. Does this group help with adrenal issues, or is there a different
Rileyfloof
in
Thyroid UK
8 months ago
Zytiga - Lupron
I was on Zytiga ( now Abi) with lup for several years and it kept my PSA to undetectable. I am now on 0rg0vyx instead of lup and my PSA remains undetectable after 6 years. Sode effects have been tolerable EXCEPT the I developed osteoporosis of the spin and now have multiple collapsed vertebrae and
I was on Zytiga ( now Abi) with lup for several years and it kept my PSA to undetectable. I am now on 0rg0vyx instead of lup and my PSA remains undetectable after 6 years. Sode effects have been tolerable EXCEPT the I developed osteoporosis of the spin and now have multiple collapsed vertebrae and
Schnab
in
Advanced Prostate Cancer
8 months ago
PAF … ? Further echo
Hi all, I’ve been quiet on the group for a while now as after my horrible introduction to rapid AF 18 months ago prompting a couple of stays in CCU things have settled on meds. The cardiologist has discharged me back to the Gp , apart from ectopics & odd thumps/ bumps I am well on adizem & flecanide
Hi all, I’ve been quiet on the group for a while now as after my horrible introduction to rapid AF 18 months ago prompting a couple of stays in CCU things have settled on meds. The cardiologist has discharged me back to the Gp , apart from ectopics & odd thumps/ bumps I am well on adizem & flecanide
Sniggetts
in
Atrial Fibrillation Support
20 days ago
Is it common to get laryngitis with aps?
I have what seems like laryngitis for 4 weeks now. I'm struggling to talk for long. I'm seeing my ENT doctor Thursday for my ears and hope he will help with my throat (probably won't because it's ear clinic). Just wanted to say I haven't had any sort of virus before this I'm just wondering if aps can
I have what seems like laryngitis for 4 weeks now. I'm struggling to talk for long. I'm seeing my ENT doctor Thursday for my ears and hope he will help with my throat (probably won't because it's ear clinic). Just wanted to say I haven't had any sort of virus before this I'm just wondering if aps can
Charts
in
Hughes Syndrome APS Forum
6 months ago
Open Heart Surgery Ahead
Born with a bicuspid valve I guessed this day was coming…just not so soon! I will be 56 when they open my chest on August 15th. I would much rather have the TAVR procedure but at my age the long term planning doesn’t support that method at this time. So, OHD it is. I have significant procedural anxiety
Born with a bicuspid valve I guessed this day was coming…just not so soon! I will be 56 when they open my chest on August 15th. I would much rather have the TAVR procedure but at my age the long term planning doesn’t support that method at this time. So, OHD it is. I have significant procedural anxiety
Jafib
in
Atrial Fibrillation Support
22 days ago
OK bloods...Still plateauing??
Hi again 👋About 7 weeks ago I increased my levo from 50mcg to 75mcg after discussing here. Initially, revved up again. Happy days- more energy, lost a small bit of weight, mood improved etc. I have started slipping back again and thought I'd get my bloods done again before I do anymore 'tinkering'.
Hi again 👋About 7 weeks ago I increased my levo from 50mcg to 75mcg after discussing here. Initially, revved up again. Happy days- more energy, lost a small bit of weight, mood improved etc. I have started slipping back again and thought I'd get my bloods done again before I do anymore 'tinkering'.
Caffeinefreezone
in
Thyroid UK
8 months ago
Weak positive
Hi there I had a weak positive ANA it said speckled and 1.80 My dr has said no other action needed. Do I have the beginning of lupus. I already have type 1 diabetes, hashimoto and vitiligo. Thanks for any advice
Hi there I had a weak positive ANA it said speckled and 1.80 My dr has said no other action needed. Do I have the beginning of lupus. I already have type 1 diabetes, hashimoto and vitiligo. Thanks for any advice
Demilouise
in
LUPUS UK
6 months ago
8 hour flight
I was diagnosed with ET with jak2 about 5 years ago, my platelets aren’t bad at all only 790 at last count, so am only on mini aspirin at present. Going on 8 hour flight soon, should I take any extra precautions? A colleague told me I should be taking fragmin as such a long flight! Does anyone have any
I was diagnosed with ET with jak2 about 5 years ago, my platelets aren’t bad at all only 790 at last count, so am only on mini aspirin at present. Going on 8 hour flight soon, should I take any extra precautions? A colleague told me I should be taking fragmin as such a long flight! Does anyone have any
Footballwidow66
in
MPN Voice
6 months ago
Dr. Bianco: video from Thyroid Foundation of Canada
from 9 months ago. Somehow it ended up in my youtube feed this morning. He makes the point that L-thyroxine doesn't always manage to result in good fT3 levels and patients need Liothyronine. https://www.youtube.com/watch?v=PGlYO_H4Gdc&t=2682s
from 9 months ago. Somehow it ended up in my youtube feed this morning. He makes the point that L-thyroxine doesn't always manage to result in good fT3 levels and patients need Liothyronine. https://www.youtube.com/watch?v=PGlYO_H4Gdc&t=2682s
gabkad
in
Thyroid UK
6 months ago
Low hemoglobin
I started hemodialysis in Aug with an emergency chest catheter. I had 2 units of blood as my hemoglobin was low while in hospital. Then in hospital again in September and another 2 units of blood. Got my labs today and hemoglobin was 6.8 so they gave me Mircera and iron. When I did PD I got Mircera
I started hemodialysis in Aug with an emergency chest catheter. I had 2 units of blood as my hemoglobin was low while in hospital. Then in hospital again in September and another 2 units of blood. Got my labs today and hemoglobin was 6.8 so they gave me Mircera and iron. When I did PD I got Mircera
horsie63
in
Kidney Dialysis
8 months ago
24hr Holter
Hi, Recently started back on Bisoprolol for palpitations/PVCs after 7yrs off. I'm on low dose, 1.25mg but they've really calmed down what were pretty uncomfortable symptoms (3 A&E visits in one weekend!) Anyhow, have a holter monitor booked for next week and not sure whether to stop the Bisoprolol or
Hi, Recently started back on Bisoprolol for palpitations/PVCs after 7yrs off. I'm on low dose, 1.25mg but they've really calmed down what were pretty uncomfortable symptoms (3 A&E visits in one weekend!) Anyhow, have a holter monitor booked for next week and not sure whether to stop the Bisoprolol or
BillyBBalls
in
AF Association
6 months ago
Previous Heart attack/stent
2016 when my life changed. I look back now and see that my life in a wierd form changed for the better following my heart attack at the age of 55. Since having the stent placed I realised how restricted my body had been and the relief this procedure had given me. I attended rehabilitation classes for
2016 when my life changed. I look back now and see that my life in a wierd form changed for the better following my heart attack at the age of 55. Since having the stent placed I realised how restricted my body had been and the relief this procedure had given me. I attended rehabilitation classes for
Frazzelena
in
Sudden Cardiac Arrest & Heart Attack
6 months ago
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